Kylie

When you have children, you have to learn to tell yourself that babies are not all born healthy, and whether they have 10 fingers and 10 toes is really not so important. It's all just part of parenting. If you aren't willing to accept having a child with a problem, you just shouldn't have kids because the odds are there. Most people out there aren't taught this, and until you have something hit you up close in the face, you just aren't aware that it doesn't always go the way you expected. We have learned and grown from our experience so far. When you are hit with something like this, it doesn't mean you aren't good parents. It just means that you are learning about something that no parent ever expects to have to learn about. - Katie, mother of Jacob & Kylie

About Kylie, in her own words (wink, wink)

In October 2003, my mommy and daddy learned that they were pregnant with their second child. They were considered a high-risk pregnancy due to the fact that mommy had gestational diabetes. At 18 weeks they learned that I would be a little girl. This tickled both of their hearts because they already had a son. Our family would be complete.

I was born March 31st, 2004. I had a head full of dark hair and blue eyes. I was 7 pounds 8.4 ounces and was 20 inches long. I was beautiful. Three months after I was born mommy started to notice strange symptoms like swollen legs, bluish face and extremities, fussiness, and trouble breathing, which mommy suspected might be related to a heart murmur I had that doctors told her was innocent. My heart murmur was not innocent.

I am now 17½ months old. I was diagnosed at 4 months of age with two congenital heart defects. One is called pulmonary stenosis (my case was severe at the time), where blood flow from the heart to the pulmonary artery is blocked. The other is called an atrial septal defect, which is a hole in the walls of my top two chambers. They are life-threatening without surgery.

I had an intervention done on my heart back in September 2004. I currently have minimal blockage and a hole in my heart. The hole is smaller-sized, so they just want to watch it for awhile since there are no health risks and there is a chance for it to close on its own. I will need to take antibiotics for any surgical or dental procedure and I will continue to see my team of cardiologists.

I currently receive occupational therapy and physical therapy. My gross motor skills are delayed and I am receiving physical therapy to enable me to walk. My brother and I also have what is called sensory integration dysfunction. Sensory integration dysfunction is the inability of the brain to correctly process information brought in by the senses. I am hypersensitive. The hypersensitive child will avoid being touched or touching things when at all possible.

Thank you for allowing us to share our story with other families!

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